Johns Hopkins Emergency Room

 Mother's Intuition has been gearing up stronger than ever lately. I didn't recognize it until Wednesday when the 'A-ha! Lightbulb' went off as I hurried around the house packing bags.

At work Tuesday around 3p I made myself finish a couple things that I could have waited until the next day to handle.. I then felt the need to pack my laptop and all my work to bring home. I haven't been carrying my things home lately but for some reason I just felt like I needed to do so. On my way home I filled the cars gas even though I barely had less than ½ a tank. I told myself, “It’s a pretty day, you’re not running late.. just fill up”. All evening I watched Annabelle like a hawk in a daze. Wednesday morning I asked Mady over and over for extra snuggles before she left for school, I knew I would be seeing her in a few hours but something inside was already missing her terribly!

Annabelle has been doing well lately, she has been smiling more than ever and her bursts of energy are lasting longer and longer.. I love watching my toddler act and behave as a normal toddler should, but at the same time, I know deep down that this wave of good days is only temporary. As promised, a dark storm is on the horizon and this trip of smiles and giggles has overstayed it’s welcome. I knew we were gearing up for a downhill slide, I just didn’t know when. My Mother’s Intuition knew it though. I was preparing myself, my family, our home and schedules for what would be next, and I was right…

Wednesday morning I watched Annabelle far longer than I should have. When I felt as though she was doing well enough to head towards the sitters, we gathered our things and walked outside. I was packing the car when Annabelle sat down on the sidewalk, “Annabelle, sweetheart! Let’s go! Mommy is running late!”. She watched me from her sitting position with hands on her little knees. This is the moment I was waiting for and anticipating.. but I was so lost in the hurry of getting out the door that I overlooked the BINGO moment! As soon as I walked around from the side of the car to get Annabelle, I noticed she was vomiting – Blood.. and a lot of it.. :( I picked her up to stand and held her as she finished vomiting for what seemed like an eternity. Of course when she was finished she began moaning and turned around to reach for me to hold her…. Smearing disgusting vomit and blood between the both of us, I cradled her into my arms, turned the car off and walked straight into the house to the shower. I stood there holding her shiver and moan in the shower in silence between the both of us. She was exhausted and clearly miserable and I was just shocked, “What do I do now?! What does this mean? Where is the safest place to take her? MCV will not see this child ever again, but can she make it all the way to Hopkins?” I was so frazzled and disorganized in my thoughts. I couldn’t think about a single thing into the future, I couldn’t figure out what I was thinking at that moment! I think I was in shock. Reality was here…. It’s Go Time.

The dog was barking her head off the entire time Annabelle and I were in the shower, I was so mad with her – ah that dog can be so annoying! I turned the water off and heard, “Knock. Knock. Knock.” –WHAT THE WHAT?! WHO'S AT MY DOOR?! WERE NOT EVEN SUPPOSED TO BE HERE?!" I quickly wrapped Annabelle in a towel and laid her on my bed and I threw a robe on myself as I peeked out the window. Oh my gosh – the Speech Therapist!! I had completely forgotten we were scheduled for Speech Therapy – on one hand, I was grateful she was there because if the morning hadn’t gone the way it did – we would have missed the appointment! Gosh I am coming unraveled, quickly, this isn’t good. I apologized to her several times with my face three shades of red. This was a good thing though, I could use it to my advantage! I got Annabelle dressed quickly and she sat with the speech therapist to ‘work’ while I packed our bags and got myself ready. I had to make a million phone calls, collect paperwork and organize our things. I wanted to have Annabelle’s hospital essentials packed (extra clothes, slippers for running around, lambie, blanket, several filled cups of water to make bottles on the road, entertainment, etc). Annabelle struggled to stay awake during speech therapy – she told our sweet therapist “Na-night Na-night” repeatedly. Once I had myself and the car packed, we got on the road. The therapist and I chatted briefly about her progress which isn’t going so well.. and I also mentioned the possible need to begin feeding therapy as Annabelle is NOT chewing/swallowing solids. She can only eat pureed foods at this point. The wait list for the Children’s Hospital Feeding Clinic is years and I was questioning whether or not there would be an availability from OT to do some feeding therapy with her. She'll follow-up with our coordinator, Cara, for me and be in touch.

I carried my exhausted baby to the car and loved on her for much longer than I normally do .. standing in the middle of my driveway I kissed her soft sweet cheeks about 20 times and told her how much I loved her, how proud of her I was for fighting and also how sorry I was for how this day was about to treat her. I am CONSTANTLY facing this internal HELL of needing to do justice and the right thing for my baby girl and also wanting so badly to protect her from all the pain that is endured when we walk thru those hospital doors. My heart breaks but my determination for answers and help carries me thru. I triple checked the carseats LATCH system, I tightened everything I could and fastened her into the carseat as comfy and snug as possible. A couple tickles and one last forehead kiss and we were on the road….. but only for about 10min, I had to stop for a Grande Cinnamon Dolce Latte with No Whip from Starbucks. Hey, how else do you expect me to make it all the way there?!

The drive wasn’t terrible, despite my hatred and fear of i95. The traffic wasn’t bad and we rarely stopped. Driving thru Washington and the overwhelming interstates interchanges with a screaming baby in the backseat was enough to convince me to start smoking for the first time in my life. Fortunately, as fast as we entered DC, we were already out of the city and moving along towards Baltimore, MD.

Pause / Side Note. I thought Richmond and Petersburg had some rough areas of town … OH – MY – GOSH!!! Two blocks past the baseball field and we were in some of the most terrifying areas of town I have ever been in my life.. no, I take that back, this WAS the roughest area I have ever been in my life! I locked the doors and begged Siri to stop navigating me down every single zig-zag side street there was. FINALLY I could see a shimmer of an area that was glistening in the sun and didn’t look condemned. It was Johns Hopkins, I screeched, “Were here baby! Annabelle, we’re here!!” (it didn’t really matter, she slept most the entire time..). Now that we found the hospital… finding the Emergency Room was the second battle. Equally terrifying. And more frustrating than anything. It took several blocks around this HUGE hospital until I found the main parking deck.. then I saw the sign for the ER. Whew!!

I collected our bags, packed them strategically with all our belongings in one place, money / ID / Insurance card in my back pocket. Phone in my other pocket and a limp baby girl over my shoulder. I felt like I was carrying 50lb of dead weight on my shoulders as we waited to cross the 4 lane streets and crosswalks into the ER. I was immediately met with a nurse at the sliding doors that asked if she was conscious. I responded with a breathy exhale: "She isn't, she isn't 'unconscious' but I cannot keep her awake today and I couldn't wake her at all to get her out of the car." The nurse took her from my arms and carried her to triage. We checked her oxygen levels, BP and another nurse joined us, asked if she had allergies and I told her yes. They placed a red Allergy band around her ankle and she was quickly taken to a room where the nurse followed me and I handed her all our information: Annabelle's name and stats, Insurance, my ID and I recited who our doctor was. This was wonderful - I wasn't away from my baby and I wasn't bothered by the paperwork process of the ER before getting immediate care. She was able to print Belle's name band and find all the records we've previously sent to the hospital on her own within minutes.

As soon as we were in the room I was met by our ACTUAL nurse that would be working with us thru the day, she asked why we were here. "Well, we are in the Emergency Room because Annabelle has been vomiting blood all morning. We are 3 hours away from home because of a combination of puzzling things that have been happening over the course of 6 months... her life. No offense to you at all, but this story isn't short and if I need to repeat it for someone else, would you mind if we do this all at once?" I just knew I would offend her but she smiled and said, "Exhale mom, it's ok today. Annabelle will be taken well care of.. let me go grab some people." She walked out of the room and immediately tears POURED on the floor and covered my shirt. I took as many deep breaths as I could to stop the water works, I knew I needed to pull myself together before doctors came in - the flood of emotion was unstoppable, overwhelming. I couldn't believe it. We were going to get help - this was it! There just are no words to how intense that felt.

The nurse returned with a Resident and two Attendings. The four of them sat around the room with me, we all found ourselves a chair / bed and started to talk. I didn't explain anything in detail. I never said one bad word about our prior hospital experiences. I kept our conversations extremely matter-of-fact.

• "Annabelle struggles to maintain her body temperature." Period. 
• "Annabelle has bouts of mysterious pain and we are puzzled where it comes from." Period.
•  "She sleeps, rests, all day some days. A simple run around the playground will knock her out for hours or an entire day." End of story.

I didn't want to provide an ounce of more information than necessary. I enjoyed engaging in conversations that THEY intiated. When they would ask for clarification or more information about a certain topic, I would ask deeper what they wanted... this was a perfect process - they guided their own thoughts, not me. If felt SO nice to be able to sit across the room from physicians that were TAKING THE LEAD on my daughters care and not turning the table to the desperate mother without a PhD to figure out this puzzle. We talked for a long time and finally they all said they wanted to speak among themselves and would be back.
A few minutes later the doctor returned and told me their game plan; "Mom, this is what we want to do. We need to get a couple different people in here to talk to you - something is going on with our little Annabelle here and I think it's going to take a few brains to figure this out. What are your thoughts?"
Me: I think the look on my face and the exhale in my shoulders told the story. "Thank you, so very much Doctor. I agree with you, and this is exactly why we made the trip today to visit you. Thank you, I look forward to meeting with others and will do anything and everything you and others need to make this as easy as possible. Thank you for your concern.... thank you for caring, you can't imagine how much that means to me.."
Doctor: We would like for you to speak with Hematology based on her bloodwork, I know you've already spoken to someone but we think it wouldn't hurt to have another perspective this afternoon to contribute their thoughts. Gastroenterology needs to be involved for three reasons:

1. Her diagnosis of Eosinophilic Esophaghitis, I would like their opinion on this vomiting re: your current food trials
2. The bloody vomit itself and how this could relate to EoE or something beyond a flare and a different internal problem. 
3. Annabelle is extremely lethargic, they need to be part of her immediate care and our plans today as to what we need to do for her. 

We also want Genetics involved and believe this will likely be the key player in helping Annabelle today. In the meantime, we will check her blood sugar periodically during the day because of her vomiting this morning and inability to eat or keep anything down. If her sugar is low we will likely start IVs right away but the goal will be to wait until after everyone speaks to you before we do any sticks so we know just how much blood work we want to run. Do you have ANY questions? And can we do anything at all to make things easier for you while you are here?
To tell you that my nerves were eased is an understatement. To say I was relieved and sat in that hospital chair feeling like the most incredibly blessed family in this world wouldn't be big enough. All I wanted to do was cry my eyes out and let the water works FINALLY fall - this is what my baby needs, oh my God, Annabelle is going to be ok! Not a doubt in my mind allowed me to believe while sitting there that this day would be a disappointment. I knew no matter what, I would be leaving with a wealth of knowledge and new leads. Whether I wanted to hear their opinion on my daughter or not, this will absolutely be one of the biggest leaps in her journey - it was happening, right now. That emotion was bigger than my best words.

Nurses assessed Annabelle thoroughly, she wouldn't wake up. They hooked her to monitors and I asked if I needed to lay her down or if I could hold her while she slept. I don't get to do this often.. and I just knew her anxiety would be thru the roof when she woke. I wanted my baby close. They let me cuddle my sweet little baby with all the monitors. It was at least an hour and a half before she started to wake up.

She woke up as they were pricking her little toe to check her blood sugar. I cringed, I swear that's the worst thing ever - I would rather donate blood than have my finger pricked. Annabelle however, didn't flinch, she is a champ and sat back the entire time and just watched the nurses move around her. She didn't get out of the bed the entire day. She asked to cuddle (in her own little non-verbal way), all day we held one another. She drifted back and forth from falling asleep and looking around. It was quite clear this isn't a healthy 2 year old. She should be running, playing, stirring trouble. It wasn't a hard sell in the ER to convince the staff that we had a true problem. Annabelle can be a handful many days, but in the emergency room this day - she was an angel. She was sick. She must have known patience and allowing the doctors to do their jobs efficiently would bring her the fastest help.

I didn't wait long at all before the team of doctors and consults began. As soon as Annabelle's sugar was checked, it read 70 which is fantastic considering her day, the GI staff met us. I was greeted by a Resident and a Med Student. The student sat back, rarely asked questions and listened to the story. The Resident and I discussed Annabelle's history - the past 6 months of downhill decline, tests that have been performed already, and our current situation. The Resident asked lots of helpful questions and guided me along her train of thought, it was actually very 'fun' (if that's even possible) to hear and experience how other doctors think and brainstorm GLOBALLY around things. Once we were finished discussing Annabelle's case, she called the Attending and he joined our room within minutes. With him in our room the Resident gave him an overview about Annabelle and everything we discussed, she asked me to stop her if anything was being relayed incorrectly while she briefed the attending. After the overview was explained, he directed more questions. He spoke with us for less than 10min, but it was equillivant to about 3 hours of efficiency. It felt wonderful to not feel like I was wasting a big doctors time, and he still was able to collect everything he needed to know about Annabelle.

After the GI doctor left, the Resident and Med Student representing Hematology joined our room. We repeated the same process. Once they left, the Genetics teams followed. I wasn't left alone for more than 5 minutes tops, between each team meeting with us. The longest assessment was with Genetics. We worked thru so many conversations about family histories, my pregnancies, Annabelle as a newborn, developments, everything. The attending was actually part of the conversation nearly the entire time of the assessment. I am incredibly grateful that the ER staff pulled Genetics to be part of Annabelle's team, I think that was the best decision and not one that we have worked with or considered yet for Belle. And in the end it turned out, it really was the best :)

Shortly before 6pm the ED Doctor came in to speak with me. They wanted to check Annabelle's sugar again to continue keeping an eye on it and said that he just paged all the doctors from the various teams. They will all discuss Annabelle and then determine the best game plan for our next steps. He wanted to touch base with us once again and thank me for driving to Hopkins, how grateful he was that Annabelle is getting her deserved attention and care and allow me to ask HIM about any questions or concerns I have before all the big docs start talking. I mean, really??? How OUT OF THIS WORLD is that? Now that is exactly what you call 'caring' .. 'patient care' .. a true doctor that is doing exactly what he should have started med school for in the first place. Our nurse was with us most the entire day, but it was so nice to also be in contact with the doctors as well. I felt very 'taken care of / carried along' the entire time. This was the very first time I have ever gotten that feeling from a hospital... well, since CHKD. Between the Children's Hospital of The King's Daughter's and Johns Hopkins, I never want my kiddo's care being handled anywhere else!

Annabelle asked to cuddle, once again, I laid on the bed with her in my arms and she rested her head on my chest. She played with her little fingers as we sang softly. She's such a slow, quiet, cuddle bug when she wants to be. Of course the cuddling wasn't all sunshine - it was also very warming.... warming in the sense of SHE PEED ALL OVER ME! How she did it I don't know. But thank God I have learned from past experiences of being constantly puked and peed on.. I have extra shirts packed for myself in her diaper bag. Thanks kid. After I changed both of our clothes, we sat back down and I watched our entire team across the hall sitting around a round table. Each of the Attendings, the ED doctors all discussing their notes written on their own note pads. I loved hearing Annabelle's name being pronounced repeatedly during their discussion. I wanted to video tape the team effort. I was in absolute AWE of this coordination.

Finally, they broke their meeting and individually came back to our room and thanked me for coming in and we would be in touch soon. The ED Doctor joined us to discuss the consensus.

Between all the doctors and teams, they all concluded and feel confident that Annabelle is battling a Metabolic Disease. The term they continued to throw around was an "Inborn Error of Metabolism". The more the doctor attempted to explain this foreign language to me, the more upset and confused I became. I didn't understand his words, I didn't understand this new terminology, I didn't know how severe this was and I didn't have a clue what it involved for my little girl. He stopped speaking several times to ask me if I had questions.... I had a million, but nowhere to begin. I didn't know what questions I even had, I only knew that I was NOT grasping this thought at all! I knew the question marks were pouring out of my ears in front of him as I sat silently nodding my head. He asked once again, "Is everything ok? Are you following me?"
Me: "No.. to be honest, I'm really not. And it's nothing against you or this explanation, but I truly am lost. Would you mind telling my pediatrician what you all have concluded because I can promise, there is no way I will be able to regurgitate this conversation back to her when she calls later tonight."
The doctor smiled and looked at the clock.. I piped up quickly, "Oh! No worries about the time! I have her cell and she's sitting on top of it to hear what's happening!" :)
I called Dr. Young and she picked up immediately, I handed the phone to the doctor and he put her on speaker phone. Then, the three of us all talked for quite a while. She had questions and so did I. He turned many questions back to us and we were all pleased at where we were headed. I could sense the feeling of comfort thru the phone that Dr. Young was feeling. If she were becoming relaxed by this conclusion, than that meant I could also.

The plan was to begin running a lot of labs to start the process of finding out if/what Metabolic Disease is going on. We will start at a very high level and then work our way down. They also wanted to run labs to ensure there wasn't anything acute happening to Belle's little body that would need immediate attention at the hospital - such as losing a lot of blood internally based off the vomiting this morning. Once all the labs were in the system and ordered, it was time to start IVs.

Child Life was with us off and on a lot during the day. They are always a blessing and a relief to have. There was an entire Child Life Team that works specifically in the Emergency Room! They had a huge closet of toys to play with and choose from.. iPads galore, bubbles, irritating music instruments etc. They joined us and were able to wake Annabelle up and bring her to a good mood while the nursing staff got all their things prepped.

First we began by starting a catheter for a urine sample. That experience is about as pleasant as you can imagine it is. Poor baby girl. Fortunately it was very quick and over before we knew it.

Second was starting an IV. I asked if I could hold Annabelle in my newly discovered favorite position for IVs. It's sad that these are my most proud discoveries lately. I like to sit in a chair or the bed and hold her like a bear hug. I wrap her legs around my waste facing me and put my arms over hers to where her arm is running behind me. From there the nurses can hold her arm in place and I have full control over the rest of her body. She rests her head on my chest once she finally gives up the fight and is usually more still vs other positions where she tends to fight harder because she has more opportunity to move around and pull away. The IV ended up taking 4, FOUR sticks to get into place :( Ugh heartbreaking. I absolutely hate having to hold her down for bloodwork. The words are always on the tip of my tongue "STOPPPP!!! PLEASE!! NO MORE!!" But I know I can't. I hate it. HATE it.
They were able to get all the blood they needed and then some. Once the IV was in place and they began to tape it, they lost the vein. The nurses looked at one another and finally I did step in, "Please, if you already have all the blood you need, don't worry about repositioning the IV. I think that hand is finished anyway and I would like to give her a rest before moving to the next hand. I think she's ok with fluids so if they need to give her anything - can we do it later?"
Nurse: "Absolutely mom. No worries. Annabelle did fantastic and we definitely got plenty blood so let's give her a rest and let her go for a walk for a little bit. You did great too :) I love to see a parent that's such a loving advocate for their child. You really seem to care, and that shows. It's refreshing and makes our jobs a lot easier sometimes."

Annabelle couldn't walk. She tried to walk for the Genetics teams hours prior and with every step, she stumbled and fell. I put her on the ground to walk and her little knees buckled and she cried. It wasn't worth upsetting her to walk at all. I carried her up and down the hall and together we picked out another toy to bring back to our room while we waited for test results. 

The bloodwork came back shortly after 9:30pm. Her labs were abnormal of course but the tests for a Metabolic Disease would take days before they were ready. Based upon Annabelle's condition in the hospital (at this time she was back to sleep again... as usual), they offered to admit Annabelle and keep her for observation, begin fluids if she wouldn't pickup on her feeds and be on hand if the vomiting began again. I asked if we had other options and the doctor told me that we also had the option to go home. Most likely, fingers crossed the team is correct, this is a Metabolic Disease. If that is confirmed, the treatment will be based upon what that diagnosis becomes. Therefore, even if Annabelle isn't doing well between now and the time we get test results, our action plan will remain the same "Treatment based on the diagnosis". That cannot come any sooner than Friday at the earliest. I didn't want to stay at the hospital. I didn't want to keep Annabelle in the hospital any longer than necessary, especially when we wouldn't gain anything more than what we would waiting for the same results while at home. I needed to get back to work. I missed my Mady and Annabelle surely needed her own bed. I thanked everyone at the hospital and all the staff we had been working with for almost 12 hours. We got our discharge paperwork and prepared to head home.

As we were removing all the monitors from Annabelle, I cautiously asked our nurse, "Soo.... what's the safest, most un-life-threatening way to get home from here? Please understand, I am a country girl from 3 hours away.. the streets I drove to get here literally scared the sweet begezus out of me!" She burst out laughing... I wasn't laughing, I was serious as a heart attack. She said, "Oh girl, you and me both! First of all, be careful walking to your car. Second, lock the doors immediately. Third - follow these directions to get to the interstate, ready? ...."

As I collected all my things, I loaded our bags and picked a sleeping little Annabelle up and laid her back over my shoulder. Everything was packed so my hands were free.. One hand held my daughter and the other hand strategically carried keys between each finger to use as a method of stabbing someone if necessary. (This is the moment in which I realized I need a tazer or equillivant when having to prance around downtown Baltimore alone with a baby..) I took two steps outside of the hospital doors and looked both ways. Noone. Really? No freaking cops? Security? Nothing! It's 11pm at night in this terrifying town and I'm practically setup to die!

I looked both ways and behind myself, scanning everything and moving my long legs as fast as they could move. Annabelle and I zig-zagged the parking deck under the most overhead lights available until we got to our car. People were lingering around everywhere. Street corners, in the parking deck and everything. As soon as we got to the car, I dropped Belle in her seat, threw the bag in the car and made my way to the driver's side without even buckling her up. I immediately locked the doors before I exhaled, likely for the first time since leaving the hospital. Annabelle was snoozing like an angel. I leaned into the backseat to strap her in. I rearranged everything I would need handy for the car ride home. I set out filled water cups to make with formula if necessary during the drive. I plugged my phone into the charger and bluetooth and told Siri to take me home. I stretched my neck repeatedly and threw my hair into a sloppy-bun on top of my head and put on my game face.
Exhale, ready, set, go...

Two blocks away from the hospital and my eyes were already the size of quarters, "WHERE IN THE HELL AM I?!?! HOLY CRAP!!!!!" Again, I cannot emphasize enough, this area of town is no freaking joke and my tail doesn't belong anywhere near it. The first stop light that turned yellow and prompted me to stop... I came to a stop and whispered under my breath to Belle, "sweetheart..... where.... are we?..." The far left street corner had two sketchy guys standing and talking. There were dogs running around everywhere. I look across the street to see a suspicious Cadillac sitting with it's running lights on and then turned to my right; a prostitute - I can't place a dime on whether this thing was a man or woman. I threw my head to look in both directions, checked the light once again, 'Red', and I hit the gas. Hell no am I sitting in the middle of this. The next light that asked me to stop was also treated as a 'Yield Sign'. I told myself, "Nope. No way! If a cop thinks he's going to pull me over for running red lights, he can follow me all the way to a well-lit Wawa!" Fortunately, for Annabelle and I both, we did survive, and without any tickets. We ran every single red light and never blinked at a yellow light. Sorry law, I'll abide you later but downtown Baltimore isn't happening with this lady.

Once I was set on the interstate, I checked my phone and it was the pediatrician, she texted me to call her when we got on the road. I did and Dr. Young and I talked for a very long time. She immediately said, "So... do you have any idea what they were talking about?" I told her, "Nope! So thank God you do! Can you please break it down for me in English, baby language?"

Our conversation was very long but here is the summarized version:

• A metabolic disease would explain Every.Single.Thing that is happening to Annabelle. Every single symptom she has presented and continues to show.
• A metabolic disease would have GIVEN her Eosinophilic Esophaghitis.
• A metabolic disease is harder than you can imagine to pin point, it's huge, bigger than you can imagine and quite challenging even for the best geneticist. 
• A metabolic disease has the potential to be fatal to Annabelle, to become a chronic lifetime disability, can continue to manifest destroying her system (continuously, or progressively until we can finally reach a true diagnosis and begin treatment if there is even a treatment plan available). However, a metabolic disease also has the potential to be as teeny-tiny and small as one little ingredient her body is lacking and pulling the entire system down. If we can find that and give her that one little ingredient, we can save her entire life and bring her back to a perfectly healthy - full functioning little girl! 
• Again, a metabolic disease is huge and we need to prepare for a long road.

Dr. Young explained it to me like this: "Hunny, you're looking for something the size of a hay seed in the United States of America. We do our testing to first narrow this down by region.. then state.. then city.. county.. street until you find that one little Hay Seed that is the culprit of all this chaos. Now, that being said. It could also be a Hay Seen in VA and a Hay Seed in Washington state, the combination of the TWO could be the cause. It could be a problem the size of Richmond or a problem the size of Texas. We don't know. She could easily have a Metabolic Disease that is common and we can determine a working treatment plan next week, or she could also have a Metabolic Disease that isn't even discovered yet. These diseases are changing literally daily so prepare yourself."

This gives me so many mixed feelings. It gives me an enormous amount of new hope and it gives me a flood of fear that we are facing a long road ahead of us. I kept peering to the backseat to my little girl sleeping and a frown wouldn't leave my face. Part of me was hopeful that this was the cusp of good news on the horizon and the other part was scared to death at how long this could potentially take to help that innocent child that deserves answers NOW. Dr. Young is a breath of fresh air to me when I am comprehending the worst. She stayed on the phone and couldn't slow herself down from opening so many medical books in her home at midnight, clicking thru the internet and talking with me thru possible scenarios. I love her. She's getting a helluva Christmas present this year ;)

i95 was no joke at 1am. The construction traffic was beyond infuriating! For hours we would move from 4 lanes of traffic into 1 lane. The times in which there wasn't any traffic, the interstate was covered with deer. I prayed with everything I had to make it home alive, and I wasn't kidding. I was so very tired. I was alone with Annabelle. The day had been so long, exhausting. I never once ate the first thing in the entire day. I hadn't drank anything since my morning Starbucks. I needed sleep ... and I also needed answers for my kiddo. My mind couldn't remain in one place for longer than a second. My eyes struggled to stay open but somehow we did it. Annabelle and I got into the door so late / or should I say early in the morning. I made her a new cup, changed her into comfy jammies and laid her into her bed. It wasn't minutes that my head hit my own pillow and I was asleep.




Johns Hopkins is a one of a kind hospital. I am grateful beyond belief for the care and concern they provided for Annabelle, and our entire family during our stay. I am floored by their team effort to piece together this case and I have no doubts in my mind that even if this isn't a Metabolic Disease that they will not continue to do everything in their power to move forward and continue to pursue plausible explanations for this. The doctors did also mention Mitochondrial Disease as an explanation, but the possibility of a Metabolic Disorder surpassed that. If we find we need to explore more areas, they will next move towards Mito and also with Oncology and bring more teams together. Answers are on the horizon, I know they are... thank you Lord, and hold on Baby Belle, were getting so close!